Accepting Change with a Progressive Disease

A selection of five photos in a montage. All showing either my sister - a beautiful brunette - from babydom to her 40s - or that same sister plus me also brown haired and white, also from teeny to 40s ish. We’re always happy, we are always clearly loving each other
Dealing with grief in the saddest of times
5 March 2022
In a bedroom setting, two of my fave carers - both female - are masked and uniformed up. They are faking a mean / arms crossed pose.

Two really mean carers, yesterday. (Not really. They are lovely)

Multiple Sclerosis in a downward, unpredictable spiral isn’t pretty. But then neither am I. And I guess I just have to live with both those facts. Hey ho.

MS isn’t always progressive. But it often is. It doesn’t always progress fast. But it sometimes does. There’s very little you can do to predict your ongoing progress. No wonder that feeds into the anxiety that frequently comes hand in hand with actual symptoms.

And right now I’m in the middle of a storm of change. Meh… Some posts inbound!

 

Daily carer visits

My latest significant ickiness to ‘give in’ to? Daily carer visits. Weekdays to put me to bed. Weekends to both haul me out of bed and then later to plonk me back in. On a good day I could manage all that alone. On a bad I’d have to be asking my wife or my children. And when I can avoid that I will. ‘Cos guilt. ‘Cos pride. ‘Cos I wanna save love and energy and laughter for them. Not sorting out catheters, meds and water, and hauling me unceremoniously into or out of bed.

It’s a hard kick in the teeth to adapt to, with no way of dictating what time they will turn up to plonk me away for the night. Earliest is a ghastly 5.50pm. I’m lucky if I get to a slightly less ghastly 7.30pm. That’s a depressing life change to get used to. There’s only so much Netflix and YouTube and loneliness a guy can take. I do try reading from time to time but my cog fog has me re-reading chapters. Or pages. Or sentences. Meh.

Every one of the carers is minimum ‘lovely’ up to ‘totally delightful’. Some of them even laugh at my bad jokes. I suspect they might be paid extra for that.

 

Front of pic is me sitting up in bed. I have just been plonked there. Behind me is one of my fave carers. She’s smiling and giving a V sign. She has a wicked laugh

One of my fave carers. A wicked laugh!

 

But it won’t surprise you to know that there’s a significant staff turnover. I dunno what they are paid but I guess it’s low. Even with the ‘humour Mark’s humour’ bonus. So I’m constantly welcoming new strangers into my home, my bedroom, my bathroom. It was weird at first,  but you get used to it. ‘Only my wife sees that’ has long gone out the window.

An outdoor shot, me in a wheelchair on the left. Looking up at one of my most delightful carers.

Buki and I. She is in the ‘totally delightful’ category.

 

Family Dynamics

And with me disappearing early evening, I’m deprived some of my best family time. 16yo is fine being off doing the usual 16yo stuff. But my 11yo, I miss that extra evening nonsensing. And with Mrs W. working long hours, we are ships passing in the night. Or at the coffee machine in the morning.

This year the family took a holiday without me for the first time. And attended a music festival, also without me.

I get why. They need a break from me from time to time now. To do normal stuff. Without all the faffage that comes with looking after a very disabled person. Still bloody hurts though. I do hope I’m allowed back into the holiday/festival fold soon. It hurt! Maybe we take a carer?

 

 

 

 

5 Comments

  1. Anina says:

    Dear Mark. No words can properly describe how I feel reading this. Despite your clear sadness and frustration as the MS takes more and more from you, you still manage to have a sense of humour, and positivity. I guess one of the biggest positives is that you are still living at home with your lovely family, despite the need for carers. I know you cherish that. That they need a little break occasionally is inevitable, although I can imagine how painful that is for you. Bloody MS. You still shine through though. Hero. Xxx

  2. Julie Dean says:

    Hi Mark, I completely understand how you feel and although you may not feel positive all the time , a good sense of humour and a positive mental attitude is imperative. You can do this, Mrs W and the kids will always have your back and I am sure they found it tough too going away without you, but as you say that may change in the future. It is always important that everyone gets some “me” time. Stay strong, you are still the person that your family and friends love . Seven years of having carers and I am still at home and have accepted this is our way of life . Carers are amazing and an integral part of our support network. Take care xx

  3. CrazyLegs says:

    I am not far off where you are. I can still navigate most things but falling during transfers is a huge risk, every time.
    Stay strong brother

  4. Alison says:

    Coping with humour as always with every thing this dratted condition throws at you. I have had carers 4 times a day since I fell and broke my leg just before Xmas – indoors and not a drop had passed my lips! MS strongly suspected for the cause and suspicions of osteoporosis as well means I’m only just out of the airboot and walking indoors in shoes with a trusty frame. I’m lucky that I have a similar time of day and the same 2 carers consistently – but bed time is still at 9pm and I agree how many box sets can you do! It has been very hard to adjust to them looking after my needs and doing all of my meals etc – as grateful as I am for their help – as I live on my own. They are very different one is quiet, considered and very kind, the other has a wicked sense of humour that really helps in those embarrassing moments. I am struggling to get a home assessment for more aids at home as I am stuck in downstairs rooms as I cannot manage the stairs and cannot get out of my house because of high steps – I miss my garden so much, I can see it through the window from my bed, but it’s not the same as sitting in the sun and fresh air. Physio reffered me begining of May, still chasing them…….hopefully it won’t be too long. I have also talked to my boss to say I can’t come back to work so I’m looking at if I can have ill health retirement. Big changes, big adjustments. Hoping to see much more of my 2 beautiful granddaughters as the silver lining and no work time stress as well. I hope you are managing the not working milestone ok xxx

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